The Natalie & Alice Fish Story

We are the Fishes. In 2011 two of our five children; Natalie and Alice were diagnosed with a rare gene disfunction called Leaky SCID (Severe Combined Immune Deficiency). Their condition is so rare that only two cases are reported in the U.S. each year. Both girls have endured much, and have spent most of their young lives in and out of hospitals due to common illnesess a healthy immune system would overcome. The required treatment for our girls is a bone marrow transplant.
Although the new marrow could mean a normal life for them, it will be a long and arduous road. This blog is to share our experience as parents and the courage of our children.

Sunday, January 1, 2012

New Cut in a New Year

I walked into the hospital room this morning to see Natalie sitting up in her bed, hunched over and coughing up blood. The nurse said her sores had opened up from the violent coughs, and because her platelet counts were so low, her blood was not clotting fast enough. Although we were assured this was a normal activity for bone marrow patients, it was heartbreaking to witness. Each cough is agonizing to watch as she fights through the sharpness that holds her throat and mouth hostage.

Her hair came out by the handful this morning, so we decided it was time to cut it. She wasn't too keen on the idea, but warmed up to it mildly after I told her that I would go first. I had never shaved my head before, so this was a first and possibly not the last. I must say, I'm excited about waking up tomorrow morning not needing to worry about bedhead. Plus, I look like the rest of my brother-in-laws and nephews who are already reaping the benefits of being bald. Natalie was pleased enough when her own hair was finally gone. She says it feels better, although her scalp is tender to the touch. She looks beautiful.

The doctors are pleased with her progress, but caution us that she still has a long road to recovery. We are very proud of her, and although there are more frowns than smiles lately, she is showing her grit as she muscles through each jolt of pain.

Again, Lisy and I are so grateful for the love and help from all of you. One of our greatest desires of late is; having the ability to adequately express our love and appreciation for the burden taken off of our shoulders by all of you. We love you, and thank you from the warmest places of our hearts.


News Article in The Daily Herald


  1. Natalie - You are beautiful!! I love those pretty eyes of yours! Keslee and Bria have been following your blog closely and always ask how you are doing. We pray for you each day and we are so glad you are going to be better soon. Thank you for your example to us and thank you for being so brave with all the things you have to do. We love you! -Shumways

  2. Natalie, you are so adorable and beautiful. God bless you all the time. I am so glad that you are going to be better soon.
    Big hugs,

  3. I think you look beautiful Natalie! You are a brave girl! My 9 year old daughter has been following your blog. You and your family have been an amazing example to us. We live in Pleasant Grove and know mutual friends who have told us about you guys. You're very inspiring and we hope the very best for you all!

  4. Natalie,
    You are so courageous, beautiful, and inspiring! We love you and your family so much and pray for all of you constantly. I think it's so neat that you love art. I do too and LOVE your turtles on this blog. I would love to come and do some art with you when you feel up to it. You keep up the good work and tell your dad to keep rubbing your feet--there's a lot of healing it that. Much love,
    Your first cousin, once removed who you really don't know;0)

  5. You look like an angel Natalie, you have such pretty eyes. Darcy just learned to make cute hats, she would love to make one for you if you want one.

  6. I just knew you would look gorgeous! It just makes those amazing brown eyes look extra big and beautiful. And just tangles!
    I read one of my favorite poems today about a tiny little acorn, and it reminded me of you. Would like to hear it?

    Little by Little

    "Little by little" an acorn said
    As it slowly sank in its mossy bed;
    "I am improving day by day
    Hidden deep in the earth away"
    Little by little each day it grew;
    Little by little it sipped in the dew;
    Downward it sent out a thread-like root;
    Up in the air sprung a tiny shoot;
    Day after day, year after year,
    Little by little the leaves appear;
    And the slender branches spread far and wide,
    Till the mighty oak is the forest's pride.

    I think you are just like this little acorn; you are working so hard every day, both your body and your spirit. You may not feel like you are improving, but you are. And one happy day you will see the amazing growth and changes that have taken place. I know it is very hard work and it makes me sad that I can't help you with it; but, I am cheering for you, and I am praying for you. So keep working little acorn. Be brave and strong... little by little, and day by day, you are becoming something more amazing than you can possibly imagine. I am so proud of you and am honored to be your friend.

    Love- Sis. Strong

  7. Natalie, you look so beautiful. And soon your hair will be as long as mine! I miss your lovely smile and I'm looking forward to seeing you again soon. I love you very much!

  8. You are a beautiful child, Natalie! I wish I were as lucky to rock a shaved head like you do. I am sending so many hugs and smiles to you, and your precious family. You are an inspiration!